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Uncertainty and loss

We hope that the information in this section will be useful to you at this very difficult time. For more information on uncertainty and loss we have a PDF document for parents and families which we have created with Together for Short Lives. This is available to download at the bottom of the page.

Close up of baby's hand holding the finger of a parent

Uncertainty and loss: key terms explained

This page contains definitions of some of the words and phrases that you might hear in specialist antenatal clinics and neonatal units during this time.

Finding out your baby's future is uncertain

The information on this page is for families who have been told that their baby has a life-limiting condition and whose future is uncertain.

Ongoing care

Depending on your baby's condition, your care team may talk to you about their ongoing care and where this will take place.

Close up of nurse holding a pen over several paper documents laid out on a desk

End of life care

It is not always easy to predict the time when your baby is likely to move into the final phase of their life. For some, it may only be realised hours or days before,…

Baby's tiny foot being held by a parent's thumb and index fingers

Being involved and making memories

Whilst on the unit, you should be supported to become an expert in caring for your baby.

Doctors stood together speaking in a hospital setting

Palliative care

The information on these pages is for families who have been told their baby may need palliative care.

Bereavement support for you and your family

Services that have supported your family are best placed to discuss what type of bereavement support is available. Whether it’s counselling, therapies or spending time…

Download 'Caring for your baby when the future is uncertain'

Download a PDF booklet of this information.

The information in this section is due for review September 2027

If you have any feedback about this page, please email: [email protected]